October 26, 2010

When this picture was taken, two years ago...

It was two years ago when I took this picture.  At the time, Fawn didn't want me posting it to the blog.  I didn't put up too much of a fight.  Now, we're ready to share it.

Before you get the impression that we physically abused our child, let me give you some context.

When this picture was taken, two years ago, Jade was having hundreds of seizures in a day.  Earlier that day, Jade had had an atonic seizure (also known as a "drop seizure") onto the paved walkway leading to her aunt's house.  Actually, she'd had a couple.  She would have about a dozen drop seizure in a day (in addition to her other seizures).  In spite of the padded helmet, she always managed to land on her face.

When this picture was taken, two years ago, Jade was eating her last meal before starting the ketogenic diet.

If you aren't familiar with it, the ketogenic diet, is a high fat, adequate protein, and extremely low carbohydrate diet.  Under certain circumstances, it is used to treat cases of intractable epilepsy.
 It is extremely strict and it takes a cursed lot of work, time, and attention.  Everything is measured to a tenth of a gram and must be eaten in the designated fat-to-protein-to-carbohydrate proportion.  There is no wiggle room and it is not an "all-natural diet"; there are side effects.

After having failed several medications, Fawn and I were losing hope.  We were scared to have hope for the ketogenic diet.  What if it were to fail?  The diet doesn't always work.  If it didn't work for Jade, then what would we do?  When even the experts aren't sure why it works, how much hope can you have that it will?

When this picture was taken, two years ago, Fawn (who was pregnant with Halia) went to the hospital for painful kidney stones.  The next morning, Jade and I went to the BC Children's Hospital for her induction.

Almost immediately, during the fasting stage of the diet, we saw a brightness return to Jade's eyes.  Fawn, meanwhile, was doped up on morphine.

But the diet was working!  Things weren't perfect, of course. We saw regression more than once - including one time that required an emergency visit to the Children's Hospital in Vancouver - but we had our daughter back. And that was amazing.

They don't know how the diet works - and it doesn't work for everyone - but for those who have seen it work, there's no wonder in my mind why they call it the "miracle diet".

It has been two years now since we started the ketogenic diet.  Jade is healthy and happy and smart and amazing.  From time-to-time we catch ourselves cursing how much work it is to maintain the diet, but I cannot ever forget how deeply grateful I am for the diet that saved our daughter.

It has been two years now since we started the ketogenic diet and, oh, how things have changed since then.


Anonymous said...

I am so happy for you and your family. I've followed your blogs since before Jade was diagnosed - and oh what a difference!
Swedish hugs to you all.

Megan said...

I am so glad it has worked for Jade.

Murray said...

That's wonderful that a relatively simple solution to Jade's problem was found. I know that the dite must be tough to administer but it's better than the solutions that many people find. It's very sad, though, that she hurt for so long before you found the right doctor with the right answer.

Matt, Kara, Hunter and Cavan said...

What a transformation!

Hard to believe that was two years ago already...

Opa said...

Thanks for a moving post, Michael

Catherine said...

This is amazing! We need to do more research of food. So much is connected to the way we react to it! I am so happy to see you happy and healthy little girl!

Unknown said...

Well, congratulations, you made a pregnant woman cry. ;) Not sure if it's tears of sadness or happiness though... probably a mixture. That first picture of Jade still makes my heart hurt so much, but I'm also happy to reminded how far she's come. She's an amazing little lady, and you are amazing parents. xox

Anonymous said...

What a lucky little girl to have such wonderful, caring, conscientious parents. It brings tears to my eyes when I read about this journey you all are on.